Post Takedown Burning & Pain

Hey,

I'm almost 10 months post takedown after my 3 step proctocolectomy. Since the surgery, I've had off and on issues with burning, which is I know is normal to an extent. I've also had some pain, mostly a stinging pain, during a BM. My doctor told me during my last visit that things looked ulcerated down below =\

The ulcers come and go. I'll feel good for a week or 2, and then I'll have several bad days in a row. It doesn't seem to matter what I eat either. I can have pain from pb&j, cereal, and other bland foods. I've restricted my diet to eating chicken, fish, sweet potatoes, pasta, rice, apple sauce...generally bland stuff. I found I was eating more of a variety a few months ago than I am now, but at this point, I just try to avoid the pain as much as possible, thinking that eating a blander diet will give me the least discomfort (which it does, if I eat anything spicy right now, it stings quite a bit). I'm really just hoping for some relief at this point.

I take Questran with each meal to help neutralize the stool. I've used Calmo, Aquaphor, various ointments from Coloplast, and various hemorrhoid creams when I feel swelling. I most commonly use Aquaphor/Calmo combo on a day to day basis.

I also use a really soft toilet paper (some type of Quilted Northern), and I use the Coloplast beside care foam with this TP when wiping (I just spray it on the TP, it's much easier on my skin).

I plan to talk with my doctor again very soon. But I also wanted to see if anyone else here has had these issues as well. I know the burning can be common.

How long did you have burning for? Does it still burn?
Have you had any type of ulcers in the anus or rectal cuff?

Really, any advice would be appreciated. I'm to the point where I have some days that I would gladly welcome the ostomy back, even though I was ready to move on from it. It wasn't bad tbh; it had its pros and cons. But I'd rather have some hope that I can get healthy, move on from these issues, and be able to open up my diet at some point without needing the ostomy.

Thanks in advance,

Jay

Yes, Crohn's was eliminated. I don't have any issues that I'm aware of in my small intestine nor anywhere else, if that matters.

When I say ulcerated, it's on the surface of the skin (anus and rectal cuff), not sure if that makes a difference.

I do plan to ask him if the ulcers/skin irritation could be related to the UC though, because he did leave in a small section of my rectum, which I believe is standard in these surgeries.

Jay,

Liz (Pluot) would certainly recommend a bidet to help with the butt burn, have you tried one?

The other common recommendation for butt burn is Calmosptine to sooth but also forms a barrier to protect your skin.

I'll look into the bidet!

And I'll also try the cotton ball trick. It wouldn't surprise me if there is some leakage there because I do still have nighttime accidents, 1-2 times per week. I try to prevent this as much as possible by not eating late and taking my meds just before bed.

I mentioned the cream to my doctor. I'm just waiting for him to give me a call so I can discuss everything with him and hopefully make some progress. Starting having some more stinging pain this morning after a few good days in a row. Frustrating!

Hey, here's a quick update:

I spoke with my doctor yesterday evening and explained what's been going on.

He prescribed me a lidcoaine 5% ointment to try, so I'll give that a shot. Also said we could go with a steroid ointment as well if this doesn't help with everything.

We talked about my quality of life and how it isn't exactly where I want it to be. He didn't foresee me having many issues since I'm young and generally healthy except for having the UC that caused all of the issues. He thinks I should be more along than what I am at the 10 month mark. He originally said it could take anywhere from 6 months to 2 years, but he also just thinks at this point in time, I shouldn't be having this many issues. There are times when I'm in the bathroom and it's just painful, depending on what I've eaten. And my diet is pretty limited at the moment.

He wants to do a pouch scope next week, this time under anesthesia thankfully (no flex scope in the office while I watch everything on TV!), and I think that's a great idea. Hopefully it'll give us an idea of how healthy the pouch actually looks, if it's causing any issues, how these ulcers that keep forming look, and go from there.

We discussed the possibility of going back to the ostomy if things don't pan out how we want them to, which I always knew was a possibility. As of now, my quality of life with the ostomy was much better than it is now with the j pouch. I was hoping to not have many issues at this point with the pouch. Maybe my body is just slow to respond to it, or maybe it just isn't for me.

I'm going to wait to jump to any decision until after the scope, including a bidet attachment for my toilet.

Thanks again for your advice and suggestions! I'll update when the time comes, maybe someone else will end up in my shoes in the future and need this thread as a reference point.

You may be suffering from cuffitis. Ask your surgeon to get a good look at your cuff and ask if there is inflammation you could get suppositories.

I'm not as far along as you are (2 months) but I am also disappointed with my quality of life so far and wonder how long it should take for improvements to come (or for me to ask for the bag back). Not having a bag is nice, but having pain and incontinence is much worse than the bag.

PS: Katmom how is your daughter doing? I hope better than me.

jeffereyr123 said...
I'm about 5 and a half weeks post take down. I had intense burning, stinging and pain between week three and four. It was miserable, plus I seemed to have pouchitis which I was treated for concurrently.

I started using liberal amounts of Calmosptine, which helped immensely and then started using illex which helped even more. What your describing sounds very similar to what I felt. In fact, I was thinking I had cuffits or hemmoroids at the time, but my doc says it would be very, very unkikely I get those as only like 1 mm of cuff is left.

I was definitely second guessing things at first, but since then things have been pretty great.

Yeah, I've been using a lot of Calmo, it just doesn't seem to always stop the issues, unfortunately. The Lidocaine has been doing ok, helps more I believe. But I can only apply it 4 times per day, unfortunately. I think you maybe have made a typo with illex? I searched for it, but it seems to be a type of squid, lol.

How's your frequency? Any urgency? Any other issues?

---
Scope today was fine. My pouch looks normal. He did notice some swelling in the anal canal I believe (trying to remember, I was still tired from anastheisa), so that may be causing some issues I'm having (straining, pain, swelling). He wants to do a CT scan Tuesday to see if there's anything causing the frequency issues I'm experiencing. After we look at the scan, we'll go from there with making a decision. I'm also supposed to talk with one of the WOC nurses next week to get her opinion on everything.

The main thing that's frustrating is that I'm 10 months out and it seems progress has slowed in the past few months. I have some good days, but then I have some terrible days where I'm not able to get anything done. And I don't want my life to be dictated by my health as it's been for so long. I'm ready to feel "normal". It just seems like I'd be further along with things at this point, as far as frequency, urgency, pain, burning, etc. goes. My surgeon seems to think so as well. I guess we'll see what the scan says and just go from there.

Thanks for all of the input so far.

I had my CT scan done a week ago today. Got there 2 hours early to drink the contrast. When I get called to the back, I get a, "By the way, the radiologist ordered rectal contrast as well." -_- Cool, thanks for telling me ahead of time. I only fasted for 4 hours before this. If I had known, I would have gone low-residue/liquid the day before. So that was uncomfortable. My skin started giving me issues that afternoon after the procedure, after spending a good 30 min in the bathroom after the procedure. Ugh.

Today, I talked to my doctor about everything. He said there's a pocket of fluid behind my j pouch that could be contributing to my issues. I also have a little inflammation in the pouch (pouchitis), and there's the swelling in the anal canal.

What he wants to do is surgically remove the mucus lining of the anal canal and drain the pocket of fluid during surgery. He said I should be in the hospital for a day. As far as recovery, he said I should expect some pain with my bowel movements for a week to 10 days after the procedure. I should be expecting a call by Thursday evening to set up a date and time for the surgery.

He wants to go this route, thinking it'll help alleviate my issues, before going back to the ileo. He's been great throughout my entire process, so I trust his judgement. I plan to ask him what sort of pain I should be expecting (soreness because of the surgery, burning from the removal of the mucus lining, etc.) and if my BMs will be more frequent while I recover.

If anyone has had this done before, knows any more info on the procedure, or has any other suggestions for questions I should ask before the surgery, feel free to post!

good luck! it sounds like a good plan. it sounds like any of those things could be causing your issues so eliminating them will get you in a place where you are better able to assess your options.